Looking to speak with rare disease patients and families about life after diagnosis
Hi everyone. I have a background in Clinical Genetics and Healthtech, and I’m trying to better understand what life after rare genetic disease diagnosis actually looks like for patients and families.
On a personal level, my godsister and a close friend both have children with rare genetic diseases, SMA and EB. They live in two different countries and have had very different experiences navigating care, support, funding, school/work adjustments, and all the practical things that come after diagnosis.
I’m hoping to speak with a few patients or family caregivers for a 30min call to learn from real lived experience, especially from people based in the UK and rest of Europe.
This isn’t a survey, app testing, sales pitch or clinical advice.
If you're open to chatting or would like more information, please fill in the form here or DM me.
As a thank you, I can offer a small digital voucher after the call.
Thank you ❤️